Drug resistant epilepsy

Hi there im a mum of an 11 year old boy with drug resistance epilespy has been dignosed since 2yrs old and was quite well controlled on epilm for a while and only had vacancies come towards 5yrs old weaned off meds and 6 weeks later seizures returned and now at 11 yrs old they are drug resistant and my son has so many and is on so many medicines and tried so many, has also been dignosed with learning disabilities and speech delay and a host of other learning needs hes now started on steroids for short term treatment however hes been having seizures again and is now hence reaching out i just feel so alone trying to fight for him hes on 4 other meds and have tried a few… I dont know whats helping now to be honest and whats making them worse but i just feel so guilty as a mother with him on all these medications we have a neurologist involved but not really met him only via zoom and hes a frequent impatient of late has cluster tonic clinic seizures mainly but also long seizures too. Also has a 121 in mainstream school. Any help in getting more specialised support or help would be great many thanks

Hi there - thanks for using The Hub.
I am wondering if you have a paediatric epilepsy nurse as they might a good starting point for you.
Is it more support at school that you are looking for? If so, have you tried talking to the SENCo, or Inclusion Lead at the school? They might be best placed to help you. You could also contact your Local Authority’s SENDIASS (Special Educational Needs and Disabilities Information, Advice and Support Service) - you should be able to find contact details for them through this link Find your local IAS Service | Council For Disabled Children
Hope this helps - let us know how you get on.

Hi there many thanks, its not really at school i need the help its more as is there anything i can demand or ask as a parent ive tried to reach out to his consultant and ask as hes not great on this steroid wean again hes twitchy again but hes also started on perpanel as well so Could it be that i didnt know if there were any epilepsy centres he could be assesed in i did look at private as im fed up with fighting this but i was told its probably not best as hes so complex. He will have some Councelling after easter and will go to an sen school provider in September but i just want my child back its like epilepsy and all these drugs are stealing him. Many thanks

Hi. Just wanted to let you know you are not alone. My son was first diagnosed with absence seizures at the age of 8. Was told by the doctors/epilepsy nurse that it was easy to treat and more than likely he would grow out of it. Started him on medication which straight away did not work. His seizures have worsened he now falls to the ground. Have tried 7 different meds not working. My son is now almost 13,I have battled with his doctors made complaints changed his consultant. Begged for cbd oil, nothing all I now get is, is your son taking his medication properly and spoke to like ■■■■ by his doctor like it’s my fault. All done over the phone as because of covid he has not seen a doctor in over a year. Sorry for the long rant, just keep pushing for what you believe is best.best wishes Lisa

Hi both

You most definitely are not alone and it is great that Young Epilepsy have created this safe space for parents to share our concerns and seek advice.

There are alternative treatment options for those whose epilepsy is drug resistant. As parents it is important that we feel empowered to have honest conversations with our paediatric medical team.

Have a look at the alternative treatments that are on the NHS website - follow this link Epilepsy - Treatment - NHS and ask your medical teams to talk through the appropriateness of these (important to remember that not all of them would be appropriate to specific types of epilepsy) and how you would go about being referred to someone who could explore these further.

Good luck with everything - it can feel like we are constantly fighting for our kids, and it is important to recognise the impact this has on us and to share those feelings with our peers.

Dear Lisa thank you for your reply mu sympathies to you as well for fighting this everlasting long fight… Thing is the drs dont live it day in and day out they dont see the side effects of the medications cause there is lots and half the time they dont tell us we have to work that out and when we do sometimes they try and fob us off…there is another diet other that the ketogenic diet as well but getting drs to agree would be another battle im sure… There are also some other that might be able to help figi water ive heard is a good one and alfies hope might be able to help too or put you in touch with some. Take care and thanks again for your reply but sorry your on this journey. Does your son also see a neurologist

Hi smum. Yes my son is under a neurologist she is one of the top ones, but has zero people skills… she is rude and does not listen to my son or myself, she just keeps pushing for my son to go on he very strict keto diet, I have expressed my concern over this diet as it can cause stunted growth/ health problems when they get older. My son went for therapy a couple of years ago and he expressed to the therapist that he doesn’t feel heard or listened to by his neurologist and that he would be willing to try the diet when he gets older around 14.Even she had to intervene and express to my sons neurologist about his wishes and wants but even that was ignored and in the notes that get passed to his doctor it stated that I did not want my son on the diet. It just drains you and mentally affects you as well.best wishes to you.